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Wednesday, November 19, 2014

An update on yours truly

As you may recall, I'm a post-partum cardiomyopathy survivor. This is a fancy way of saying, I'm a mom who went into congestive heart failure during pregnancy, almost died and is still living with heart failure. You can find my PPCM story here and you can read about my exciting pacemaker/defibrillator journey here.I had my one year post-implant cardiology appointment yesterday. It was a 3.5 hour, emotionally draining appointment.

First, I met with the pacemaker reps, who checked my readings for the last 8 months. I didn't realize what an invasive feeling that would be. It's just heart rhythm charts, but it's your heart story from the last 8 months. It's weird. Then when only halfway through, the rep found something interesting...and called another rep in. (Always, a comforting thing).

Then I was asked what I did on July 19th, as I had some "noise" in the morning. This freaked me out, because I have trouble remembering what I did the day before. Then I realized I didn't even know what "noise" was. After learning, noise is an external force that sends warning type signals to defibrillators, I didn't feel any better. What the hell was I doing? Was I drunk and playing with metal detectors? And while I knew that wasn't the case (as classy ladies do not get drunk in the morning and I have no access to a metal detector), that's all I could think about when the rep figured it out.

"This is completely random, but did you happen to be swimming or at Lake of the Ozarks?"

And that's when I remembered. Brent, Audrey and I went up to Stockton Lake that day to go sailing with some family friends. That morning, while the boat was being cleaned – we were swimming in the marina. Apparently, while I had happy memories of this day, my defibrillator reported a different story – as it was picking up faulty electricity on somebody's boat. I was assured that while I was fine this time around, I could very well get shocked the next time. Awesome.

Then came my least favorite part, my device going through all its rhythm options. My device is fancy and offers 12 different heart rhythm/pacing options. (Well, really 11 now, because one them brought my to the ER because the wire is on a nerve causing me to spasm every 10 seconds. Just a tad awkward for day-to-day functioning). The rhythm test lasts about 5 minutes, and in that time your heart beat keeps on changing. It's strange and it leaves me exhausted several hours later. But I'm now rocking a completely new heart rhythm...so I guess that's exciting?

Next came my appointment with Dr. M. I'll be honest, I've been dreading this appointment because I haven't been feeling better lately. I've actually been more tired, lowish-energy, dizzy, lightheaded and out of breath than usual. With heart failure, these are not good symptoms to acquire. His solution was increasing the dosage of the only medicine I wasn't maxed out on. But he wanted to see what my echo would bring.

I spent the 30-minute echo preparing for the worst and trying not to cry.

And then Dr. M came back into my room, and told me something I never expected to hear.

I processed this for a few seconds, and then started sobbing some ugly tears. Of the PPCM survivors who do recover, the majority recover within the first year. That first year I only recovered 6%, followed by 11% the second year. The fact that I went up 15-20% my third year is just unbelievable.

As for my unfavorable side effects, I'm on too much medication now. The new plan is to divide my medications between day and night and see if that helps at all. Cutting back on medications too soon is a risky way to relapse, so that is a last case scenario.

There's no guarantee I'll get all my energy back or feel like old self ever again. And I'll probably be on medications the rest of my life. But I now have a normal life expectancy, and my pacemaker/defibrillator surgery now feels completely worth it.